You're in my thoughts all the time, but especially today.
Thank you for your help in the post!
Welcome to our community!
Judy, Happy New Year to you and your family! May 2012 be a year of healing for everyone.
You're in my thoughts all the time, but especially today.
Happy New Year!
Just a quick note to say hi! Today is October 7, 2011. I'm wondering in the year that's gone by if there's any progress with your sons treatment or diagnosis?
Just a quick note to say hi! have you tried the Dysautonomia (autonomic dysfunction) forum here?
There's a few parents who post there about their children and can give you quite a bit of info on POTS w/children and maybe some dr's to go to. I think there's a list of dr's under introduce yourself or general info post
Also, the NDRF http://www.ndrf.org/ has tons of info and dr's - another great site is www.dinet.org - some of the info there to me is lacking but it does have a forum with great people and list of doctors.
If you suspect POTS, have his dr do a tilt table test or find one who will - most of the clinics/drs who deal with ANS issues will do a TTT and autonomic testing to see what's going on.
For me to get dx with NCS/OI related to my heart was a TTT =)
I have a one yr old daughter who has CAH (adrenal insuffiniciey) I was just browsing on the internet soy formulas and seizures. I switched her to soy a couple of months and then off due to a lot of spitting up. At the time she was on the soy, she was having seizures. Just last night It click my daughter hasnt had any seizures for a week or so. Thats the same time I took her off of the soy formula. I feel like your post about this matter is like you are talking about my situation~ thankyou
We're both tired and she's in a lot of pain. Had lots of myoclonic jerks today. She saw the rheumatologist today, she thinks she may have raynauds too. So she ordered a calcium channel blocker - very low dose. I will have to monitor her bps more frequently and regularly not whenever I think of it! We see pain management specialist Thursday.
Thanks for thinking of Whitney.
Thanks so much for thinking of Whitney! No new answers...the doctor now thinks its neuropathic pain syndrome. But she didn't seem too committal and ordered more MRI's (brain and spine).
Just a quick note to say hi!also curious to see when and if that new drug will come out, and maybe help more!!!
Just a quick note to say hi! HOW ARE YOU???? and your son>??? Things here are not much better....we see new doc in about a month...fingers, toes crossed and lots of prayers!! His memory is getting so bad....and they think his spinal fluid is LOW, and will remain low, as his body thinks it is FULL so to speak, as it has been low for so long, it sees that as normal. So his brain is just bouncing off the sides of skull at times. It was a god thing, i did answer the woman you told of me....i have not been here in a bit! please update as to you and yours!!!
Just a quick note to say hi! Thankyou
Welcome to our EDS community! : ) "selma"
Thank you for everything! i had a little labwork and all came back low/normal. i dident get a copy of the labs but told i dident need any hormones at this time. im not taking any meds for the swelling and was told my neurosurgeon wont treat my seizures. my regular neuro tells me its from brain damange either gamma or my craniotomy. im taking 2500mgs keppra a day ,no control.my hubby said he sees the diff in me to and its hurting our marriage. will i ever be that person again? the personality change does scare me and i cant do anything about it. any ideas on that? i hope you are doing good. thanks for your support and help, it means alot
I just saw your poating relating to autonomic issues and a possible dx for your son of Ehlers Danlos. My three Children ad I have EDS and I do a lot of pt support. Please contact me at ***@**** I amy be able to help you figure out where to go next with it. I have autonomic dysfunction as well
Just a quick note to say hi! i havent been to the endo yet . my neuro is sending me to her endo and told me she was really good . i go tuesday so i have my fingers crossed. i still having seizures and im getting to the point im scared to leave home as i get sick and the heat i pass out. i really havent had alot of testing. i have never had any special test just any time of day i go to lab get blood drawn and wait for follow up. how have you been doing? i hope all is well with you and your family.
His services are Friday. I will be there. I have been helping my aunt out with him and everything for the past 3 weeks. He developed a cyst on his spine that burst, then his heart issues made his situation complex, so he developed a clot at the surgery site, coded, and while he survived that he never got better so he just was in constant pain for weeks and just got worse and died the other day. He never could move. It was so sad as just a few days before he played in a symphony.
Hi, yes Cody was doing much better later in the week. If he uses to much energy one day though, he pays for it the next couple of days. He played some wiffle ball at a party yesterday, so we'll see how he does today and tomorrow. He got really hot and had to come and put ice packs on his neck. I hope it wasn't too much for him.
Just a quick note to say hi! i went to my neuroligist yesturday over all my seizures and weakness and low bloodpressure. i was told that sometimes low pit hormones can make seizures uncontrolled and the gamma knife will effect my pit hormones. my neuro is refering me to a new endo and told me she is very good , so im crossing my fingers!my neuro told me the damanage from the tumor or gamma could cause increased seizures but were looking into the hormones first. im hoping its just lack of hormones because it seems easiest to fix and if hormone replacement would make me feel better all around sounds like a blessing to me. thanks for your support
Just a quick note to say hi! thanks i am feeling better. i havent had any testing to find the cause of my grand-mal seizures. my neuro just told me because no one in my family has seizures its unknown. sorry bad at names , had a 20mm cranio mine was 22mm when i had my craniotomy. i did lose vision in my left eye but thankfuly it came back! thanks for your support!
Sorry about your ankle! Yikes!
Hope you feel better soon! im sorry to hear you broke your ankle. i hope you get better soon , injoy the love and support of your family.
You're in my thoughts all the time, but especially today. oh poor kid.... yeah that tumor and head injury could be?
im still a bit iffy with ebs as shes still complaining of head aches but also when she was littler she had episodes of a trance like state she would just stop exactly how she was moving and stare wouldnt respond to anyone, then she would come out and act like nothing happened?? later i found out that there was something called an absent seizure but she wasnt checked because by time we got to see a pedi she had stopped doing it. she also had this odd thing where her head would be looking at you but her eyes took a few seconds to catch up but only when turning her head.
shes my super little odd ball
Thank you for everything! did the doctor tell you not to do mri because of radiation poisoning? that was ebs doctors reasoning. hope your boy is going ok
Just a quick note to say hi! i did have gamma knife monday. it wasent bad just the screws for the metal frame hurt. i wont know anything for 6 months to see if it shrank or kill the tumor. im staying sick to my stomach and very bad headaches . thanks for your support
Welcome to the Dysautonomia Community! :)
Lapsang Souchong hmm i have to try it. Sounds intersting.
Welcome to Tea Time Cafe im glad to see you found interest in us and i cant wait to see you post.
Happy Thanksgiving! Thanks for the nice note!
Thanks i will try that and see if it helps.